Those were the three statements that resonated with Joe Lofaro in October of 2015 when he was diagnosed with Erdheim Chester’s Disease (ECD).

Lofaro said his response took a few seconds to sink in.

“My mother and brother were there, and we sat for a minute; I cried for about 30 seconds and then I said, ‘OK, let’s go beat this,’” Lofaro said.

Lofaro said his diagnosis causes him to want to raise awareness for ECD, but also for rare diseases in general. The last day in February is Rare Disease Day, which was first established as a day of observance in Europe in 2008.

Lofaro is one of three people in Tennessee with ECD. There are 170 in the United States, and 600 in the entire world with the diagnosis. That’s one reason it took about 2½ years to officially be diagnosed, as other possibilities were ruled out at hospitals in Jackson, Nashville and other states.

Lofaro’s short answer to describe ECD is a “slow cancer of the blood.” The more scientific answer is it’s a disease that causes over-production of white blood cells that can lead to organ failure or deterioration of bones and tissue in various organs. The brain is one of the organs potentially affected by the condition, and that’s one that’s affected Lofaro the most.

He was checked for stroke as he’s had speech and balance issues throughout the process that began in April of 2013 with what he thought was the flu. Brain scans indicated he had multiple lesions on his brain stem, which caused the lack of balance and slurred speech.

He went through various diagnostic tests, including multiple spinal taps, to try to figure out the root of the problem before ECD was the final diagnosis.

“It was frustrating, just not knowing why all this was happening,” Lofaro said. “And I usually tell people I’m fine and everything’s good, but there were some days that was a lie — because it’s one thing to be sick and a totally different thing not knowing why you’re sick.”

Lofaro said there’s no known cause for him to develop ECD.

“I don’t guess it matters as long as it’s not something I can pass on to my children, which I can’t,” Lofaro said.

A longtime journalist at various newspapers in Middle and West Tennessee before working at UT Martin in their sports information and communications departments, Lofaro is now retired as his condition caused him to go on disability last year.

“I’m not used to that yet,” Lofaro said. “But I deal with it. I’m still able to get around, but I haven’t driven a car in a few years.

“My mind still works well. I can still remember things. My speech just gets slurred later in the day when I get tired. But you know what? I’m going to keep fighting, and I still plan to beat this thing.”

Reach Brandon Shields at bjshields@jacksonsun.com or at 731-425-9751. Follow him on Twitter @JSEditorBrandon or on Instagram at editorbrandon.